Caught the school lying to us and GOSH about son's progress

[LolafromA]

Hi everyone. Posting it here as I need an advice. Thanks in advance.
Long story short… My son who is now in Year 4 had speech delay. While still in Nursery we were told by SENCO to sort out the funding and apply for an EHCP. Which we did. Didn’t get the place in the same school so we got accepted to another one. Of course, the new school did not need our ‘funding’ and supported our son using their SEN budget. Now we understand how SEN budgets work so I know we got tricked. During Reception year my son’s speech was developing rapidly. He was a sweet boy, very compliant, had friends, loved going to school and enjoyed learning despite speech problems. The teacher described him to me as having a ‘math head’. Which made sense since my brother is Physicist and my husband Cambridge Uni graduate (Astrophysics).
We got a place eventually at the school that we wanted (that advised us to get an EHCP) and my son started Year 1. He settled well and we received positive feedback about his academic progress. The teacher said he just needs to be more independent but they will work on it.
Now a month later during Parent Teacher meeting I mention to the teacher that my son is being assessed by GOSH (2nd opinion) for High Functioning ASD and I will be bringing forms to fill out about his behaviours etc. The teacher seemed surprised that our son has been diagnosed with ASD (my son is in Year 4 now and I am still not 100% sure but at the same time I realise that I am probably surrounded by aspies in my family (math gene is strong). My brother reminds me of Elon Musk a lot - very inteligent, based in Silicon Valley, studied Physics, Optical Engineer, geeky etc.
Now since I mention ASD, things change at school. All of the sudden I am invited for a meeting with SENCO, teachers and S&L Therapist and told my son needs one on one in Math and English lessons four times a week, lego therapy, of course S&L therapy. The amount of funding needed I was shown £12k costs.
At the same time my son (Year 1, has just turned 6) was assessed by GOSH professionals and the tests showed my son’s spelling is as a 9yo, Math - 8 yo and Early Reading Skills - 7 yo.
Because of Covid lockdown I found out these results only at the beginning of Year 2. It all made sense to me because I could not understand how this clever boy needs so much support. Remember I had to teach him during lockdown myself.
Year 2 started and I would ask my child if he has a TA. He would say that no and he is learning together with the whole class. I started questioning TA arrangements with the school and was told that my son has TA now. Later turned out TA was spending only 20 min twice a week with my son. Smoke and mirrors I know… Then another lockdown started from around Xmas. Again I got to witness my boy how easy he is to work with, how amazing memory he has, reads a text - answer questions correctly, comprehends etc So after the lockdown I started calling Local Authority as I felt we are being exploited. His EHCP was bringing the school extra 3k (top up funding). I ceased EHCP at the end of Year 2. Speech Therapist was giving him identical English lessons that I had to teach my son during lockdown myself. So I realised it’s another ‘smoke & mirrors’. The school tried hard to pursue us to keep an ECHP however I followed my gut feeling and told them to stop all the support as my child doesn’t need it. And guess what? My son had a good Year 3.
Meantime GOSH sent Educational Psychologist to observe my son (beginning of Year 3). Around Xmas I get a report from
Gosh and I can’t believe what I am reading. See below.

Cognitive and Academic Development
L cannot maintain independent learning without support and prompting. Mr X reported that L is reading at approximately a year 2 level (1 year behind). However, comprehension is a significant struggle; L struggles with inference and even simple retrieval of information he has read. Even with modelling, he struggles to answer basic questions.
Friendships and Relationships
Mr X reported that L had one friend, and that if that child were absent one day L would probably be on his own (e.g. during breaks), as he would struggle to join in socially with the other children. Mr X said that L does not have good social skills and only has one friend.
Mr X informed me that L previously had 1:1 support most of the time but now does not. Mr X feels that Lukas does need 1:1 support as he is unable to work independently without support.

Meantime a month before that above feedback to GOSH, SENCO’s reply to us:

In terms of verbal interaction, we would be looking closely at how he is doing so in the classroom.
There is no dispute that he is interacting well with his close friends in the playground. I also added into the annual review report about vour observations of him in the playground with other children.
Indeed, LA may feel that the TA support that L requires can be met by the class TA. I have made it clear that he does not need full time 1:1 in the classroom. It is quite normal to prompt other children from time to time, L just needs a little more than this. Mr P (Year 2 teacher) said that L is a lovely child to have in the class and easy to work with.

So after reading the GOSH report I go and speak to Mr X and ask how come my son’s reading is a year behind. Mr X replies ‘Don’t worry about L’s reading. His reading is fine!’ I said ‘Well I have just read Gosh report and it said this and this. Mr X suggests to speak about it all via Zoom when Parent Teacher meeting happens.
PS My son always had a group of friends and is a popular, soft spoken boy, polite and its all written in the End of Year Reports.
So during Parent/ Teacher meeting Mr X tells me my son scored above average in comprehension tests, has a group of friends, very good in mental math, has good vocabulary etc
I contacted GOSH and emailed all the correspondence (evidence) from SENCO regarding my son. Emailed all the evidence of how my son scored top mark 40/40 in Phonics and what Mr X said about his comprehension, friendships etc
GOSH right away arranged joint Zoom meeting with Mr X, SENCO and me. And all lies have been exposed. Complete silence from SENCO! They did not even try to defend their previous feedback.
GOSH said kids like L fly under the radar, his ASD case is subtle, he will do well academically and when he is a teen he may find it harder to fit in, may get depressed.
By the way GOSH Educational Psychologist in his report said he doesn’t see any anxiety in my son and that L is a very happy child from what he observed during PE lesson. Also at the end of Year 3 Mr X (Year 3 teacher) reported my child as very confident.
So Year 4 starts (this school year) and during Parent/ Teacher meeting Mrs F starts throwing hints at me how L has ADHD. I know.. lol I explained to her that he definitely does not. I studied and educated myself on both - Asd (subtle cases) and ADHD. SENCO gets called in. Complete silence from her. I leave the meeting saying how it’s time for us to have a meeting with the Headteacher which we did. I was furious! We had a meeting, brought up conflicting feedback to GOSH and was told it was Mr X’s opinion at the time about my son’s comprehension. Basically they had an answer for everything eg it was teacher’s opinion.
So I ended up requesting Subject Access Request (all educational records of my child since Year 1). Have a look at the image attached. My son never had comprehension problems!!!! In fact he scored high average!
My question here on Mumsnet would be - what do I do now? Report the school to Local Authority, Ofsted, Dept of Education? I complained to the Chair of Governors but received a reply with little answers. Mainly he advised to contact LA and was opologetic.
Every time my son has assessments now I ask the teacher Mrs F to email me his results. My son is excelling academically, she said he is mixing with the boys and girls, has a close group of friends which obviously I always knew since I organise playdates, meet with his friends/ parents in the playgrounds. I see how he interacts. You would not even know he has ASD but as I mentioned earlier, lets see how his teenage years go. Maybe that’s when I will see the symptoms.
As of now I need a realistic advice on what can be done to expose / stop the school doing this to another family.
Thank you.

Agree with PP that you are putting too much pressure on your son. You’re basically telling him it’s ok to be autistic but only if he excels at maths and science and otherwise presents “normally”.

and yes your use of that phrase is really
offensive.

FWIW my son is 6, autistic, ADHD and a significant speech disorder. He’s also incredibly intelligent (FSIQ is 135), attends a special needs school and is working at year 3 level, and doesn’t present “normally” at all by your standards OP. My hopes for him is that he is able to live a happy life doing something he loves (at the moment he wants to work with animals). He’s exceptional at maths and literacy but I couldn’t give a shit if he doesn’t turn out to be a Cambridge graduate astrophysicist. He’ll be happier in a pile of cow manure.

You are doing a LOT of damage to your son with your ridiculous expectations, messages that he can only be autistic if it’s the “good” kind, and insisting that support that was legally to be provided for him was withdrawn.

Cambridge or Harvard is full of socially awkward geeky students. Some cope, some don’t. You can be Neurotypical and you won’t be able to cope with the pressure. Many drop out after first year.
What is subtle autism? Why GOSH were using Aspbergers term in our case? Because if you look at the press nobody calls Silicon Valley autists as having ASD. The press call them nerds and as having Aspberger’s. My brother jokingly calls himself a geek. He lacks social skills, doesn’t have many friends (hangs out with his colleagues) doesn’t have biological kids (because he never wanted them), got married in his 40’s, but then at his job he is very good! He is high achiever! Growing up he was average at school although my mother was told by his teacher he is very able, intelligent boy. Around age 11-12 started excelling in Physics to the point that he started participating in National Physics Olympiads and then after graduation studied Physics. He got his first girlfriend in his early twenties while doing Phd in Germany (fellow phd student). I remember wondering why he doesn’t have a girlfriend??:-) He is 8 years older than me and was my role model. My big brother! So this is autism that I know. And I see how he fits that profile of let’s say young Elon Musk. My brother was bullied at school as teenager according to his teacher because he was intelligent. But then maybe he was also different and teens can be nasty, toxic..

Please stop calling it aspbergers, as many people have stated it's Asperger's and not a term used these days anyway.

I watched an interview with Bill Gates on BBC recently guess what term has been used by the journalist interviewing him?

Sorry, I'm trying to tell you this gently but this is nonsense stereotyping. At risk of being outing, both dh and I studied physics at Oxbridge. Neither of us have asd. I'm a chatty teacher. It's a silly stereotype that physicists and mathematicians, or oxbridge graduates, are all autistic.

However I have come across parents like you through work, who have some stereotypical misconceptions about boys vs girls, geeky vs "normal" (to use your word). It would be delightful except that it can be damaging for your son when he's a teenager. He might not be a physicist, he might want to work in HR or be a driving instructor or a sculptor or anything.

My own mum was astonished when I wanted to do physics and got into Oxford, she thought I'd end up working for NASA or MI6. Instead I am a part time school teacher. Oxford and Cambridge are not full of geniuses, just academically above-average students. She had thought because I'm chatty and a girl, I'd go into languages or something like that. Stereotypes are just nonsense.

Sorry but you sound very naive - my mum is the same and it is endearing but only because I was a strong teenager and ignored her expectations. It could have been very damaging for me and I've seen parents like that make their teenage children very unhappy.

Of course, journalist are well known for using up to date and non offensive language 🙄

Aspegers was the surname name of Austrian scientist who coined the term to separate people with ASD who might be useful to the Nazi race and so weren't murdered.

And what level of qualification in Autism and neurodiversity does he have?

When you have met one person with autism you have met one person with autism.

stop trying to compare him to other people. He isn’t your brother, or Elon musk or anyone else. He is is own person and if your approach to him is anything close to the way your posting here your setting him up for a life time of issues.

embrace him for who he is not who you expect him to become.

We will support our child on whatever he wants to do. If he wants to be an ice cream man, that’s fine! (When he was little he wanted to be an ice cream man).
However we see that science and space do interest him a lot. He knows approximate distances between the planets, talks about black holes and how you get spaghettified. I learned about gravitational pulls from his. His brain is like a sponge. My husband and him talk about physics, space a lot!

I was not going to comment again as I find this post very frustrating. Please OP try to read up more on autism. Try to find some actual scientific works on the subject as at the moment you are just repeating stereotypes without any actual understanding of what the autistic spectrum actually is, how it presents or the effects of not supporting the person who has it.

@LolafromA but you're spelling it wrong! You are also ignoring everyone on here who is telling you to stop stereotyping people with Asd as being intelligent geeks, it is wrong, putting undue pressure on your son and quite frankly offensive. Instead of looking at all the high achieving people who maybe autistic (and many of the people you refer to have not publicly said they are autistic, they just fit your narrow definition of what autism looks like) research the wide spectrum of what it can mean to be autistic.

@LolafromA If your family is full of academics, I do understand why you believe with the evidence you have now that your child will excel academically, (not that it matters in the overall picture). I come from a family who are highly qualified and they work in high paying jobs but that doesn't mean that they are living a happy life. A friend of mine who is a doctor here but is still single in his mid 40s and he feels lonely. People having high profile jobs are not always the happiest ones, I have seen my own siblings who have no diagnosis, are highly qualified, have high paying reputed jobs.

As per someone i know from education field, they say- A child doesn't have to perform good all year round in primary school, year 6 SATs determine the predicted GCSE grades for students in secondary, you need atleast 9/11 GCSE at grades 7+, A levels 3/4 at grades B+ and above, the subjects selected at A level must correspond to the degree they have selected. So please don’t concentrate on every year report as it wouldn't make a difference in the overall picture.

I do think people are getting offended here when you put emphasis on high functioning asd because it implies to them that it's only worth having asd if it's high functioning so I do understand their point of view too. I do feel it's the culture difference, even i come from a culture where too much emphasis is put on academics and in my country a child with any diagnosis will not be treated fine but in the UK it's not the case, diagnosis or not people live their life happily with no one to judge them and I do like it, I never have treated someone with any diagnosis differently.

We need to concentrate on the main issue here which I believe is of the diagnosis. If you do feel that you were not given justification you need to speak to the SALT. I am sorry the distress it has caused you and you need some answers.

Hi op you say you will accept and support your son in whatever he chooses to do .
Maybe start that support now , accept his diagnosis, accept any help he's offered. He won't reach his potential as you are putting obstacles in his way .

It’s understandable that you pivot towards what you feel is a familiar example of a person with autism. I have three children with autism as I said and they are all very different. They also all have social communication difficulties but it manifests differently in them and affects them differently.

One of them IS a physics person and has been fascinated with numbers, technology and theory for a long prolonged period. The others aren’t at all, although one of them has very intense special interests and could easily decide one day that space is one of them. And then a few months later decide that actually horses are interesting. One cries at the very idea of maths and science.

The important thing for any child, ND or NT, is to parent them for themselves. Not anticipate who they are and will be and look to shape them according to that. Accept that all of us have preferences, strengths, motivators, aversions, and that we will live our happiest lives if that’s recognised and accommodated from childhood onwards.

He doesn’t need any support now and I think he is living a happy life now. I am very close to my son. All I see as of now is a happy, careless kid in my boy. We have a happy home. At the same time I do understand it all may change. Teenage years are worrying for any parent.
I am not going to worry about something that didn’t happen yet. We will deal with it when it comes.
Talking about happiness NTs have their problems too and can be miserable. Nothing in life is guaranteed.

By ceasing the EHCP and fighting against how the school recognises your child's difficulties you are seriously damaging his chances of reaching his potential. Dd ASD has an IQ of 162 although ed psych thought that may be a low score for her as she was heightened at time of testing. She has never struggled with the academics, got the highest EYFS score her school had ever seen but school isn't solely about the academics and neither is life unfortunately or dd would be bossing it.
Your son may have a narrow area of ability and interest but that doesn't mean he doesn't have plenty of needs elsewhere. Unless those areas are supported he's unlikely to be able to progress to the great heights you deem him capable of.

I’m sure you will deal with it as it comes but you are looking to dismantle provisions that will help you do that. You’ve benefited from what sounds like great support so far in getting diagnosed and offered appropriate interventions through an EHCP. But it is currently taking people a very long time to get new ECHPs in place. Severely burnt out and anxious kids with autism (very many of whom were coping perfectly well until the end of primary/transition to secondary) are ending up out of school for months while this all gets sorted, and even longer if the right school places aren’t available.

I imagine quite a lot of people posting on this thread will have either been through this or know people who have and really don’t want to think of you sleepwalking into something similar with your son. This may well not happen to him but if he has an ECHP it makes it a lot easier to deal with if his needs increase over time.

Not sure if it’s true but I read somewhere that the higher IQ is the more the kid will struggle socially. Basically those with average IQ do better in life.
My son just turned 6 when he had Whechler IQ test, subtest done. He didn’t have a spiky profile but it did say his Fluid Reasoning is too high for his IQ. Not sure what it means. His IQ score came back as average (~100). I would like him to be assessed even if it’s privately one more time on everything before Secondary School. Just to understand my son better at the same time to put ASD diagnosis doubts to rest.

Hi op , but by taking the ECPC away should he need it in future you might have to fight to get it back .
You don't seem to accept the school see his behaviour and development different to you .

So will 3 ASD diagnosis mean you'll accept he does have ASD?

I will remind you again my son’s ECHP was granted purely on Speech& Language only. No other special needs. His plan was all about his speech. Nothing else.

And if the diagnosis is confirmed again what then? 4? 5? 6? Opinons.

the more you post the more it sounds as if your trying to bury you head in the sand and not accept him for who he is. You’re purposely removing his access to support frankly beggars belief.

OP, I did ask before, what were the desired outcomes on the ECHP? Do you think they were met? Was your parental contribution taken into account? Was the review done well?

SALTs also cover social communication as well as speech and language. Was there an aspect of this in the ECHP?

No dd doesn't struggle socially she can read a room and adapt accordingly.She fits with whatever situation she is in at the time. So at her specialist school she would be someone who could relate to all the pupils whatever their needs by adapting her interests and vocabulary to suit the person she was with. She has always had a group of close friends and a couple of best friends.
Her biggest difficulty is anxiety aided and abetted but her sensory needs/difficulties. Oh she hates Science but speaks French and Japanese fluently (self taught mostly) how she learned to speak through echolalia stood her in good stead for learning languages

To help you understand, dd with her IQ, her fluency in three languages still has speech therapy even now at twenty. Yes you nor I couldn't identify her deficits if you listen to her speaking but the SALT does and works on them. It's not a badge of honour not to have support, it should be a badge of honour though to fight for the support and get it in place so that your child has the very best outcomes possible.